A PROSTATE CANCER DIAGNOSIS… NOW WHAT?

Table of Contents

2 3

WELCOME

6 6 7 8

ABOUT ME

10 10 12 14 15

TREATMENT OPTIONS

17 17 19

DRUG TREATMENT

20 20 21 24

YOUR ACTION PLAN

28 28 28 29 30 32 33 33

APPENDIX

Prostate Cancer: Now what?

My risk factors Diet and lifestyle Low, intermediate, and high grade

Active surveillance Prostatectomy Surgery Radiation therapies

Chemotherapy and ADT Other drug options

Preparing for your appointment Frequently asked questions Comments, notes, questions & concerns

Personal information Hospital information Names and numbers Important dates Treatments Medications Side effects

Your Prostate Cancer Playbook | 1

Welcome

If you’ve recently been diagnosed with prostate cancer, you probably have a lot of questions.

What types of treatments are available? How do my personal risk factors affect my choice of treatment? How can I possibly remember all this information?

These are probably just some of the many questions you’re asking yourself today and it can seem like a daunting task to keep all the answers straight.

Prostate Cancer: Now what? Use this section to help determine what you already know about prostate cancer and your diagnosis and what useful questions you can ask your doctor. You can also check the frequently asked questions section on page 21 for help.

What is prostate cancer? What do I need to know?

The Prostate Cancer Canada (PCC) Playbook is here to help you sort through some of your most important questions and better understand what lies ahead. Each section includes a variety of helpful information and suggested questions you may want to ask your doctor before and during the cancer treatment. The appendix section of this workbook also includes space for tracking side effects and treatment schedules, as well as an important contact list to help keep track of your doctors and appointments. Let the PCC Playbook help guide you through this new and challenging part of your life and make the journey with prostate cancer a little easier.

2 | Welcome

What do I know about my diagnosis?

Welcome | 3

Has my doctor already recommended a treatment plan for me?

Track any side effects of your treatment throughout this Playbook. Common side effects of treatment for prostate cancer include: • Fatigue • Erectile dysfunction • Decreased sex drive • Incontinence

How will this diagnosis and the potential treatment options affect my quality of life?

4 | Welcome

• Effects on emotional well-being

Welcome | 5

About Me

My risk factors Your individual risk factors can play a role in selecting the treatment that is right for you. Use this section to identify what factors are involved in your diagnosis and treatment options. We’ve outlined some useful questions for you to ask your doctor, but you can also find space for your own questions and comments in the appendix of this book.

Are there any risk factors that apply to me that I can change (mainly diet/lifestyle)? How?

Age: The chance of getting prostate cancer rises quickly after a man reaches age 50. Age is the most important risk factor for prostate cancer.  Race: Prostate cancer is more common in men of African or Caribbean descent. Family history: Risk of prostate cancer increases if first-degree relatives (brother, father, son) have had the disease. Diet: Men who eat a low-fibre, high-fat diet have a higher rate of prostate cancer. Lifestyle: Having a high Body Mass Index may increase your risk.

What do I know about my family’s history with cancer? If there are gaps in my knowledge of my family’s history, should I do additional research?

Do any of my risk factors change potential treatment plans? How?

6 | About Me

Diet and lifestyle If you checked off “diet” and/or “lifestyle” as part of your contributing risk factors for prostate cancer, you may be able to adjust your lifestyle before, during, or after treatment to contribute to treatment success. Use the space below to note any changes you can make to your lifestyle or diet or to mark any dietary restrictions or changes your doctor may suggest.

Lifestyle tips & changes (activities, hobbies, habits, etc.):

Dietary concerns/restrictions:

About Me | 7

Dietary changes, tips & improvements:

Determining the grade of your prostate cancer will help your doctor make a decision for treatment and drug therapies.

Is my prostate cancer low-, intermediate-, or high-grade?

Useful information or contacts (fitness sites, recipe ideas, etc.):

What kinds of treatments are available to me based on my cancer grade? What type of side effects can I expect from these treatments?

Low, intermediate, and high grade cancer To determine how aggressive your cancer is, your doctor will use a grading system. This system will classify your prostate cancer as either low-, intermediate-, or high-grade based on the appearance of the cancer cells compared to healthy prostate cells. Low-grade

This type of cancer cell is slow-growing and looks similar to normal prostate cells.

Intermediate-grade

This type of cancer cell is more aggressive than low-grade tumour cells and looks abnormal as compared to low-grade cells.

High-grade

This type of cancer cell is extremely aggressive and grows and spreads quickly. It does not resemble a healthy prostate cell at all.

8 | About Me

About Me | 9

Treatment Options

Treatment for prostate cancer depends on a number of factors, including age, stage, and grade of your cancer, your general health, and your values and preferences.

Are there any side effects to consider during active surveillance? What can I expect physically and mentally?

You may also consider alternative or complementary therapies, such as using naturopathy or herbal medicine. Alternative therapies are considered scientifically unproven treatments. Before using any complementary or alternative therapies, talk to your doctor or other members of your healthcare team about all the possible risks and benefits.

Active surveillance If you’ve been diagnosed with prostate cancer, your doctor may suggest an active surveillance treatment plan. This plan would involve closely monitoring the cancer with regular Prostate Specific Antigen (PSA) tests, occasional repeat biopsies, and follow up CT or bone scans to monitor your cancer’s progression. Active surveillance may be recommended if: • Your cancer is small and low-grade. • The possible side-effects of other treatments are felt to outweigh the benefits at this time.

Is active surveillance right for me? Questions and concerns:

10 | Treatment Options

Treatment Options | 11

Prostatectomy Prostatectomy involves removing all the cancer cells locally, which means removing the prostate to eliminate the cancer.

What other side effects might I experience? (e.g. fatigue, decreased sex drive, any additional symptoms, including pain):

Your doctor can help you determine if prostatectomy is the right treatment plan for you. Understanding the risks of any surgery and the side effects involved are important in making this decision. Radical prostatectomy may be recommended for you if your cancer has not spread outside the prostate (stage T1 or T2). You should still get regular PSA tests after the procedure to monitor any changes. What you can expect from surgery:

Questions and concerns about prostatectomy:

• You will be admitted to the hospital for 2-5 days. • The procedure takes 2-4 hours under anaesthetic. • A catheter is inserted at the end of the surgery. • The recovery process at home takes 4-6 weeks. • Most men have minimal pain and discomfort after surgery.

Are incontinence and erectile dysfunction side effects I should consider before deciding on a prostatectomy?

12 | Treatment Options

Treatment Options | 13

Surgery There are three types of surgery in prostate cancer.

Which types of surgery do you, or the urologist to whom you refer, practice? Are other options available at the hospital?

1. Robotic This surgery uses a camera-assisted robot to guide the surgeon through the prostate and surrounding area. This is similar to a laparoscopic procedure. 2. Open This surgery involves making one cut, 3 to 4 inches, long from below the belly button to the pubic bone to access the prostate and its surrounding area. 3. Laparoscopic Several small cuts are made in the abdomen and a video camera is inserted to access the prostate and surrounding areas. Nerve-sparing techniques can be used to try to preserve the nerves that control erections, rather than removing them with the prostate. If you have a more aggressive or advanced cancer this technique may not be recommended due to increased recurrence risk.

Radiation therapies Radiation therapy might sound scary, but techniques and treatments have evolved and today they’re much safer and much more focused than they’ve been in the past. Three types of radiation therapies exist today: • External beam radiation • Brachytherapy

Can you explain the different types of surgery?

• High-dose radiation High-dose radiation is reserved for patients with high-grade cancers, while brachytherapy is usually recommended for men with lower-grade cancers that are contained within the prostate gland. External beam radiation may be a good option if age or general health makes surgery too risky.

Does radiation therapy involve any major side effects? Am I more likely to experience side effects with one than another?

14 | Treatment Options

Treatment Options | 15

Drug Treatment

Based on my diagnosis, which radiation-type therapy might be best for me?

Chemotherapy and ADT Chemotherapy and Androgen Deprivation Therapy (ADT) are two treatment options you may receive from your doctor. Both involve different side effects and risks and are used during different stages of prostate cancer. ADT or hormone therapies are used to deprive the cancer cells of the male hormone (androgens) they need to grow. Chemotherapy is the use of specific drugs to treat cancer – it affects both cancer and healthy cells.

Is chemotherapy or ADT right for me based on my diagnosis? What can I expect from external beam radiation/brachytherapy/highdose radiation? Is there a significant recovery period? What about risks?

What are the different side effects for chemotherapy and ADT?

16 | Treatment Options

Drug Treatment | 17

How will either of these treatments affect my quality of life? What can I expect during treatment?

Other drug options Sometimes prostate cancer can become resistant to ADT, an indication that it has progressed to a more advanced stage (i.e. androgen independent). In these cases, different drug options may be required What stage is my prostate cancer? Will I require drugs for this more advanced stage?

What about drugs to treat other conditions of advanced prostate cancer, such as bone metastases, or side effects?

18 | Treatment Options

Drug Treatment | 19

Your Action Plan

Preparing for your appointment

Frequently asked questions

Seeing your doctor for the first time after being diagnosed with prostate cancer can sometimes seem overwhelming. Here are a few suggestions for your first appointment.

We’ve put together some additional questions you might want to ask your doctor throughout the diagnosis and treatment process – just in case you’re having trouble putting the words together.

• Your doctor will likely cover all the important points, but keeping track of the questions you want answered can help you stay focused during the appointment. Use this Playbook to note any important questions so you don’t forget them on the date of the appointment.

Use these questions when you meet with your doctor to help determine the best course of action for treatment and to give you a better indication of what life with prostate cancer will be like.

• Bringing along a family member or friend for support can help when you feel overwhelmed with information. They can keep track of any answers the doctor may give and ask important questions, too.

What are the risks if my cancer is not treated soon? A:

• Remember to discuss mental health with your doctor. Anxiety and stress are common in cancer patients so it’s important to talk to your doctor about how you can combat these side effects. • Remember, your doctor is there to help. It’s important to have open and honest conversations about your concerns surrounding treatment options and outcomes of your cancer diagnosis. • If you are feeling overwhelmed and don’t know what questions to ask, we’ve included some frequently asked questions in this Playbook to ask your doctor. You can also go to www.prostatecancer.ca for more important questions to ask and conversations that count.

How would the various treatments affect my quality of life? A:

• You can also access the Prostate Cancer Information Service at 1-855-PCC-INFO (1-855-722-4636) or [email protected]. This is a helpline offered in a variety of languages in partnership with the Canadian Cancer Society. • You may also wish to join a support group, such as those offered within the Prostate Cancer Canadian Network (PCCN). To find a group near you, please visit: www.prostatecancer.ca/Support/PCCN/Find-a-Group-Near-You

20 | Action Plan

Action Plan | 21

What is your experience with this/these treatment(s)?

When will my treatment begin and how long is it expected to last?

A:

A:

What are the chances I will have problems with incontinence, erectile dysfunction, or rectal issues?

How will active surveillance work? How will I be monitored? A:

A:

What happens if the cancer spreads beyond my prostate?

What are some changes to my diet/lifestyle I can make to help improve treatment outcomes and quality of life?

A:

A:

22 | Action Plan

Action Plan | 23

Is there more than one treatment option for my type of prostate cancer? How will I choose the right treatment? A:

Comments, notes, questions & concerns:

24 | Action Plan

Action Plan | 25

26 | Action Plan

Action Plan | 27

Appendix

Personal information Name: Address:

Names and numbers NAME

POSITION

EMAIL

PHONE

Dr. John Smith

Dietitian

[email protected]

647.647.6476

Phone: Email: Date of diagnosis: Gleason grade: TMN/Whitmore-Jewett Stage: PSA Score:

Hospital information Hospital name: ID#: Health card#: Private/Semi coverage: Policy#:

28 | Action Plan

Action Plan | 29

Important dates DATE

NAME

Important dates TYPE OF HEALTH CARE PROVIDER

LOCATION

DATE

Treatment given/comment/advice received

DATE

NAME

TYPE OF HEALTH CARE PROVIDER

LOCATION

NAME

TYPE OF HEALTH CARE PROVIDER

LOCATION

Treatment given/comment/advice received

30 | Action Plan

TYPE OF HEALTH CARE PROVIDER

LOCATION

Treatment given/comment/advice received

DATE

Treatment given/comment/advice received

DATE

NAME

NAME

TYPE OF HEALTH CARE PROVIDER

LOCATION

Treatment given/comment/advice received

DATE

NAME

TYPE OF HEALTH CARE PROVIDER

LOCATION

Treatment given/comment/advice received

Action Plan | 31

Treatments TYPE

HEALTHCARE FACILITY/PROVIDER

Medications TREATMENT DATE

NOTES / FOLLOW UP DATE

START DATE

TYPE OF MEDICATION

DOSE

HOW OFTEN

END DATE

Aug 1, 2014

Medication X

600mg

2x daily

N/A

Side effects START DATE

32 | Action Plan

SIDE EFFECT

Action Plan | 33

1-888-255-0333 | prostatecancer.ca 1-855-PCC-INFO (1-855-722-4636) | [email protected]